53 year old male. I've read quite a lot of posts on this forum but have only just registered. I'm starting to get quite desperate now and would love some help or advice from someone who understands this awful condition. Even just consolation as I still haven't been properly diagnosed.

My problems started 2 years ago with a painful sensation on the left hand side of my perineum. No apparent reason for this. This has developed and worsened over time. Now, the pain is horrendous and constant, no flair ups - just there all the time. So to summarise my symptoms that have escalated to this point:

Pain at the tip of the penis.

Pain at the base of the penis, left hand side. Scrotum is red and sore all over; sensitive and tender to touch. Can only be described as similar to sun burn.

Aching, stabbing, burning pain all around the left testicle, particularly at the back that spreads down the left of the perineum. Sharp stabbing, burning pain on the left deeper inside behind left testicle that spreads out across and down the perineum to back passage - pain against pelvic bones, left hand side inside. Burning, stinging pain on and around the anus/rectum. Feeling of a large object inside - akin to a golf ball.

No problem with urination. No pain when urinating. Flow is strong and can stopped/started easily. Don't need to go more frequently.

Pain when defecating. Burning/stinging pain increases at anus after defecation. Pressing against the anus causes shooting pains up inside on the left - and it's a really horrible sensation.

Sex and masturbation are too painful too (don't do either - but I am married), libido is obviously low. No pain though during actual ejaculation (when giving samples). Afterwards, pain at tip of penis increases, testicular/scrotum pain increases.

Since November 2017, noticeable ache and soreness has started around right testicle.

Good days (very rare now): the pain is just bearable, bad days (nearly always): it's intolerable. The pain continues to get worse. Sitting is the worse position, but the pain is noticeable during lying and standing and is starting to affect my sleep. Depression and frustration mount.

So, what's been done medically to this point? I've dealt with 6 different Urologists in the last 2 years. The first was a waste of time and told me to live with it. The second was OK, but seemed inexperienced in the condition and sought assistance from a main hospital, where my care was then taken up. This 3rd Urologist left and I was then dealt with by 3 others, either by letter or short appointment. During this time I have had 5 DREs (none of which showed any prostate problems), 2 MRIs, blood tests (PSA OK, WBC normal). The first MRI showed a lesion on the prostate, the subsequent one (more focussed) showed no problems. I have provided numerous urine samples (nothing discovered) and 5 semen samples and been prescribed the following for various cultures:

I'm still on 4-8 Tramadol a day, and that's the only things that helps at all - but that is a very minor effect. I've just started taking NAC N-Acetyl-Cysteine, Bromelain, Pro-biotics, Vitamin D, Vitamin B and Cod Liver Oil. Also I've got hold of some CBD oil for the pain, but I'm not expecting much from that. I also keep a pain diary as I've been referred to a pain management clinic, but it's a 6 month waiting time (likely due March/April time).

The first MRI scan showed arthritis of my back too and more recently I've begun to experience joint pain. Doing some research led me to Reiters Syndrome (Reactive Arthritis). No idea though, just an idea I will mention to the Urologist, but I did also experience long term problems with Conjunctivitis 3 years ago, which is another symptom of Reiters Syndrome.

I've seen a physio and she went through half a dozen pelvic yoga exercises to do. I tried them religiously for a month. No difference whatsoever.

All this and I've not had a conclusive diagnosis. I'd like to say its prostatitis, but my symptoms are not conducive with that. I'm left with CPPS. I've considered Pudendal Neuralgia/Entrapment and my symptoms do fit the Nantes protocol, but I appear to have a lot of other symptoms too. Also with the semen sample results, I'm now sure in my mind that this is bacterial. I pleaded with my last Urologist to give me: Zyvox/Linezolid, Vancomycin, Fosfomycin, Teicoplanin, Moxifloxacin - but he wouldn't. That was in November and now Enterococcus Faecalis has shown again I have an appointment next week for me to try again.

The only saving grace in all this is that my GP has been fantastic, but he is at the limit of what he can do for me. Right now I have this crazy idea that somehow damage has been caused that is allowing faecal matter into places where it shouldn't be, hence the coliform gut bacterias showing up in my semen. Then again, I've read so much about this malady now that I hardly know what's going on.

What next. Well I'll try with the Urologist next week regarding a longer course of ABX that I listed above. I would also like to be tested properly. I think that successful identification of any infection should made using prostatic fluid. This should be cultured for at least 5 days, testing for both bacterial and fungal contamination. Further, Polymerase Chain Reaction (PCR) DNA Tests should be carried out - organisms like Chlamydia Trachomatis, Ureaplasma, Mycoplasma that would not be shown in standard culture test methods. I also understand that for identifying the presence of bacteria within the prostate gland, then the 4 glass Stamey test or a 2 glass test also known as the pre and post prostate massage test (PPMT) should be used. After all that then I suppose my only othe recourse is through pain management, but then that seem like everyone has given up on me and it's the last resort. Maybe that route will tackle any potential PN problems at least.

What is frustrating too is the general lack of information on these subjects, also the lack of knowledge of the Urologists. None of the 6 I've seen really know much about Prostatitis or CPPS; and only sites like this that can help people. Which I'm surprised at as it seems quite a common, if little researched/understood, problem.

Anyone who has read this far, thank you and if anybody can shed light on what they think may be causing these problems, I'd love to hear from you.

Take care all.

Mon Jan 29, 2018 12:44 pm

prostate454

Joined: Sun May 01, 2016 9:48 amPosts: 643

Re: 2 years and getting desperate

I'm sorry to hear about your struggles. Yes prostatitis, assuming that's what you have, can be long, painful and frustrating. You're not alone. Your symptoms certainly sound familiar to me, well all of them except for stabbing pain in the testicles. Never had those. Lots of burning, throbbing, and aching everywhere in the pelvis region though. I also do not have any urinary problems, mostly just pain. By DRE all my uros also indicated my prostate felt mostly normal - only by CAT scan does it indicate inflamed, or prostatomegaly as it's called in my experience.

I don't think you've been put on a very good abx regimen. I was also put on Augmentin for positive enterococcus culture with no effects (even after 10weeks - has poor penetration)....other than a c diff infection. The Ofloxacin was probably the only thing on your list worth anything, and you were on it for a good while but showed no response so I question whether you will find your cure in antibiotics. I guess if I was in your shoes I'd give it one last go with a quinolone that your enterococcus was susceptible to (assuming it's even a real infection). Cipro or Moxifloxacin might be a good choice since you tolerated Oflaxacin ok. I don't think it will do you much good though.

In my experience external pelvic exercises provided no improvement. It's only with internal PT that I found some relief that I could control myself and started to give me more a feeling of control in my situation. It hasn't cured anything but it has made things more manageable. In a few months I'll be three years into this. I have a daily graph of my pain levels going back to 2015 and I need to figure out a way to post it up here. It shows a definite peak in my symptoms in 2016 and a veeerrrrryy slow reduction since then. The experts that I have talked to indicate that this is usually the way.

I highly doubt you have any fecal bacteria leaking into your body, let alone your prostate. You'd have all sorts of other more serious symptoms like sky high WBC and fever among others. Also, I have not ever been able to find somebody to perform the 4 glass test. I have had a post-massage urine culture that showed e-coli, but I treated for that and it made no difference at all in my symptoms. I think the bacteria testing is a big crap shoot.

Mon Jan 29, 2018 5:40 pm

Lux_d

Joined: Mon Jan 29, 2018 6:42 amPosts: 42

Re: 2 years and getting desperate

prostate454. Thanks for the reply, even it doesn't offer much hope. Back to Urologist number 2 today who seemed the most apporachable of the ones I've dealt with this last year.

He would not give me any of these abx - Zyvox/Linezolid, Vancomycin, Fosfomycin, Teicoplanin or Moxifloxacin. I couldn't get a reasonable answer as to why (but he'd never even heard of Zyvox). He did seem to go along with my idea of bacterial infection rather than PN.

Anyway he wanted to put me on Cipro but I asked for levofloxacine. So I'll be on levaquin for the next 3 months. Not holding out any hope to be honest. If it makes no difference, then he wants to express some prostatic liquid and do a cystoscopy (not sure what this will acihieve as I'm getting Enterococcus Faecalis and mixed coliform from every semen sample). After that I'm going to get him to discuss properly with a bacterialologist about getting me the correct ABX i.e. Zyvox. If I could buy these ABX myself I would.

Yet another DRE (makes about 7 now) - no idea why another. Damn it was sore though, the worst yet, and still is excruciating. My wife was with me and saw me go pale and I nearly fainted due to the stinging pain around my anus. I'm topping up with Tramadol, CBD oil, ibuprofen and paracetamol while I'm at work.

Tue Feb 06, 2018 12:37 pm

Madcap

Joined: Sat Dec 08, 2012 4:30 amPosts: 798

Re: 2 years and getting desperate

Hey Lux, a brief suggestion. As for the stinging pain around the anus, you might consider seeing a colon rectal surgeon. Not saying you need surgery but rather an exam. Stinging around the anus could be a fissure. It’s a small tear in the lining inside the anus. It's rarely serious and easily healed with hydrocortisone ointment you can get from the Dr. Also you might want to stop the DRE. After the initial DRE there’s no need for another while symptoms are flaring up as it can cause them to get worse. It used to be quite common to continually check the prostate during bouts of prostatitis but more and more Drs believe it’s best to leave the prostate alone until symptoms improve.

Tue Feb 06, 2018 2:24 pm

prostate454

Joined: Sun May 01, 2016 9:48 amPosts: 643

Re: 2 years and getting desperate

Good luck with the Levaquin. If you are able to tolerate it for three months and are still not cured then it's a very safe bet your problem isn't going to be solved with ABXs. I tried cipro, levaquin, and moxifloxacin and for me levaquin was definitely the hardest to take. I had to get off it after about 4.5 weeks because my whole body was starting to get really sore. Not sure why your doc wouldn't get you moxifloxacin but would do levaquin, in any case I think it's six of one, half a dozen of the other. No doc worth anything is going to give you vancomycin for something like chronic prostatitis. Side effects are risky and you'd need an IV long term to use it. Not to mention the medical industry doesn't want to risk VRE developing from vancomycin overuse.

If you have a fissure or hemorrhoid that could explain your rectal pain, but then every day when you make a bowel movement it should basically be like pooping razor blades. I've had both and the fissure had me almost ready to pass out on the toilet. If the pain is only during the DRE then I would suspect your sphincter and pelvic floor muscles are just extremely tense from the pain and that's why it's so painful. If that's the case then you would certainly benefit from pelvic floor PT. I again suffered from bad hemorrhoids for the past 4months and had a rubber band ligation about 1.5 weeks ago. All that pain and agony is 100% gone now. What a relief.

Tue Feb 06, 2018 3:22 pm

Lux_d

Joined: Mon Jan 29, 2018 6:42 amPosts: 42

Re: 2 years and getting desperate

Thanks guys. When I expressed how sore I was the uro did a quick check for a fissure and hemorrhoids. He said he couldn't see anything. The pain I feel there is just an extension of the pain everywhere else, just it feels more exposed so to speak.

I shall certainly mention about future DREs though. I think I've had enough for a lifetime.

Tue Feb 06, 2018 4:37 pm

Chavalote

Joined: Thu Dec 31, 2015 4:11 pmPosts: 660

Re: 2 years and getting desperate

There seems to be a pattern here. I think it was also after taking the augmentin when in the next culture those 3 bacterias appeared: enterococcus faecalis, enterobacter cloacae, klebsiella pneumoniae. I asked one urologist why it was and he said "there is no cause" and got angry at me.

My theory is that the antibiotic somehow breaks the bacterial balance and other bacterias appear, but I don't have the tools to do a proper research on it. I think that enterococcus faecalis is out of place but the body is confused about it and treat the new medium as if the bacterias need to be there, and if some get killed others appear. But absolutely there is a cause. And to me the same pattern repeating is an evidence.

In my case, the last 2 cultures came "negative" but the symptoms continue and I suspect that my prostate is still infected. My conclusion is that common antibiotics don't work for this. Maybe someones get to "disturb" the bacterias but they don't clean the infection completely.

Wed Feb 07, 2018 1:51 pm

Lux_d

Joined: Mon Jan 29, 2018 6:42 amPosts: 42

Re: 2 years and getting desperate

@Chavalote. Intersting opinions, thanks. I did have a positive for enterococcus faecalis prior to taking Augmentin though. The other 2, enterobacter cloacae and klebsiella became apparent after the Augmentin.

@prostate454. What is involved with pelvic floor PT. Would that be with a physio? And if so I've seen one and she just pointed me to some exercises, which did nothing for me.

Another query if I may. My Uro told me that with no improvement after 3 months on Levaquin he is going to try a prostate massge. But he wants to give me a general for this. I asked why, but he said I would absolutely have to be out for him to do this. I'd really rather not go through a general if it can be avoided. Is this common and why a general? He also mentioned some men see improvement with regular prostate massages. I'm still very sore after my last DRE on Tuesday and would prefer not to have to go through this.

Thu Feb 08, 2018 5:30 am

Chavalote

Joined: Thu Dec 31, 2015 4:11 pmPosts: 660

Re: 2 years and getting desperate

Yes, that is the same pattern as me. That's why I think that there are something there to be researched. I think that antibiotics can't cure this, they only "call" another bacterias or worsen your health in other aspects.

Thu Feb 08, 2018 3:52 pm

eadk

Joined: Mon Jul 27, 2015 10:50 pmPosts: 96

Re: 2 years and getting desperate

Hey Lux_d. I think you're on the right track with the PCR test and the prostate fluid cultures. The problem with antibiotics is that it has poor penetration to the prostate gland so you would have to take it for a while to get rid of the infection and during that time the bacteria can develop resistance to the antibiotics that you're taking. Once the bacteria develops resistance, the antibiotics would be killing the non resistant bacteria while the ones with the resistant gene survives and multiplies, which is when antibiotics stop working. I'm assuming the urologist did a sensitivity testing on the bacteria they found in your cultures before they prescribed you those antibiotics? Also, regular prostate massage/milking/draining combined with antibiotics could improve blood flow to the gland and help the antibiotics get there easier. And prostate draining would help remove some of the trapped infected fluid from the prostate.

So if you haven't already, I highly recommend you ask your urologist or find one that is willing to perform prostate massages 1-3 times a week while taking an antibiotic that you know works against your particular bacteria, assuming that your problem is bacterial.

Fri Feb 09, 2018 7:40 am

prostate454

Joined: Sun May 01, 2016 9:48 amPosts: 643

Re: 2 years and getting desperate

Lux_d wrote:

@Chavalote. Intersting opinions, thanks. I did have a positive for enterococcus faecalis prior to taking Augmentin though. The other 2, enterobacter cloacae and klebsiella became apparent after the Augmentin.

@prostate454. What is involved with pelvic floor PT. Would that be with a physio? And if so I've seen one and she just pointed me to some exercises, which did nothing for me.

Another query if I may. My Uro told me that with no improvement after 3 months on Levaquin he is going to try a prostate massge. But he wants to give me a general for this. I asked why, but he said I would absolutely have to be out for him to do this. I'd really rather not go through a general if it can be avoided. Is this common and why a general? He also mentioned some men see improvement with regular prostate massages. I'm still very sore after my last DRE on Tuesday and would prefer not to have to go through this.

No I'm talking bout internal PT treatment, where they use a finger inside you to manipulate the pelvic floor muscles. Sounds worse than it actually is. This is the only real effective way to reach the pelvic floor in men. All the external exercises, good as they are in general, never did anything for me either.

Fri Feb 09, 2018 8:25 am

Lux_d

Joined: Mon Jan 29, 2018 6:42 amPosts: 42

Re: 2 years and getting desperate

prostate454 wrote:

Lux_d wrote:

@Chavalote. Intersting opinions, thanks. I did have a positive for enterococcus faecalis prior to taking Augmentin though. The other 2, enterobacter cloacae and klebsiella became apparent after the Augmentin.

@prostate454. What is involved with pelvic floor PT. Would that be with a physio? And if so I've seen one and she just pointed me to some exercises, which did nothing for me.

Another query if I may. My Uro told me that with no improvement after 3 months on Levaquin he is going to try a prostate massge. But he wants to give me a general for this. I asked why, but he said I would absolutely have to be out for him to do this. I'd really rather not go through a general if it can be avoided. Is this common and why a general? He also mentioned some men see improvement with regular prostate massages. I'm still very sore after my last DRE on Tuesday and would prefer not to have to go through this.

No I'm talking bout internal PT treatment, where they use a finger inside you to manipulate the pelvic floor muscles. Sounds worse than it actually is. This is the only real effective way to reach the pelvic floor in men. All the external exercises, good as they are in general, never did anything for me either.

Hi prostate454 - who would do internal PT like that? Is it a specialised Physio? I'm in the UK btw. Is there any worth in doing my own prostate massages - I was thinking of getting a prostate massager as using my fingers seems impossible to do myself?

Also has anyone an opinion on the need for a general anaesthetic for a prostate massage? I saw the letter from the Urologist to my GP recommending this for expression and possibly therapeutic reasons. But a general for this seems excessive. It took me a couple of weeks to get over my last DRE (I mentioned earlier how painful it was) and under a general really worries me.

Finally, although I was prescribed a 3 month course Levofloxacin on 6 Feb, only today (22 Feb) have I actually got the medicine due to some unknown breakdown in communications. I really do despair at times at the NHS in general. In fact my overall care for the last 18 months has be certainly wanting (and that's being nice). Also, they would only give me 28 days worth - so that's 3 lots of prescription charges to make. They say it is in case I can't tolerate such a long course of this particular abx. I understand this after reading of others' complications with fluoroquinolones though.

Thu Feb 22, 2018 4:49 pm

Inflamed

Joined: Tue Aug 04, 2015 6:50 pmPosts: 1118

Re: 2 years and getting desperate

Lux, have you ever tried diflucan? 2-3 weeks of that helped me, just curious. Sometimes it can be fungal.

Thu Mar 01, 2018 5:46 pm

Lux_d

Joined: Mon Jan 29, 2018 6:42 amPosts: 42

Re: 2 years and getting desperate

Inflamed. I have suspected fungal too. In fact on my last semen sample I gave in I put a hand written note into the bag saying to test for fungal too - probably not done though as I never get to see the results. I did ask my GP for diflucan, but he was hesitant without evidence. I've done one week of a 3 month course Levofloxocin and absolutley no difference as yet. Is diflucan an OK drug, as some of the abx I asked for they will definitely NOT give me (e.g. fosfomycin, zyvox)?

Fri Mar 02, 2018 7:07 am

Inflamed

Joined: Tue Aug 04, 2015 6:50 pmPosts: 1118

Re: 2 years and getting desperate

Yes, diflucan is fine. You have to monitor your kidney and liver function while on it though. I would suggest getting a CMP blood test at least once per week while taking it, if possible.

Fri Mar 02, 2018 1:19 pm

presto423

Joined: Tue Apr 12, 2016 11:55 amPosts: 425

Re: 2 years and getting desperate

What are the risk problems if I were to try diflucan without knowing if I have a fungal infection (but having accordant symptoms)? Is it available for purchase elsewhere than a GP prescription?

Sun Mar 04, 2018 11:08 am

Inflamed

Joined: Tue Aug 04, 2015 6:50 pmPosts: 1118

Re: 2 years and getting desperate

Diflucan can be a bit hard on the liver and kidneys. I would advise to get weekly CMP blood tests to monitor kidney and liver function.

Mon Mar 05, 2018 9:47 pm

ironsheik7

Joined: Fri Nov 11, 2011 6:21 pmPosts: 34

Re: 2 years and getting desperate

Lux_d Have you had a CT Pelvic scan to see if you have an abscess? If you have not a strongly recommend getting one, I can remember the video of the Korean guy that Dr. Krongrad took his prostate out, he had Ecoli and he could never get rid of, he had his prostate finally taken out and it turned out he had an abscess all along, if you have an abscess and it's not drained then the antibiotics won't work on the prostate infection.

Wed Mar 28, 2018 7:51 pm

Lux_d

Joined: Mon Jan 29, 2018 6:42 amPosts: 42

Re: 2 years and getting desperate

ironsheik7. No I've not had a Pelvic CT scan. But I'll keep it mind, thank you. I'm now into week 6 of 12 of taking Levofloxacin. No benefits as yet, and only suffering with mild side effects of joint pain to now.

Thu Mar 29, 2018 3:17 am

Madcap

Joined: Sat Dec 08, 2012 4:30 amPosts: 798

Re: 2 years and getting desperate

Lux_d wrote:

ironsheik7. No I've not had a Pelvic CT scan. But I'll keep it mind, thank you. I'm now into week 6 of 12 of taking Levofloxacin. No benefits as yet, and only suffering with mild side effects of joint pain to now.

Lux, the side effects from the antibiotic you are taking can show up months or years after stopping. If you are feeling any joint issue at all, and especially considering you say you are seeing no benefits, my advice is to get off that drug now.

Fri Mar 30, 2018 10:41 pm

Lux_d

Joined: Mon Jan 29, 2018 6:42 amPosts: 42

Re: 2 years and getting desperate

Madcap wrote:

Lux_d wrote:

ironsheik7. No I've not had a Pelvic CT scan. But I'll keep it mind, thank you. I'm now into week 6 of 12 of taking Levofloxacin. No benefits as yet, and only suffering with mild side effects of joint pain to now.

Lux, the side effects from the antibiotic you are taking can show up months or years after stopping. If you are feeling any joint issue at all, and especially considering you say you are seeing no benefits, my advice is to get off that drug now.

Madcap, thank you. I understand your advice and I was aware of the potential problems of Fluoroquinolones from previous posts and reports in this forum. To be frank the pain I'm in, I'm willing to take that risk and will continue with the full course.

Last week I eventually had my appointment at the pain management clinic (6 months wait). An excellent Doctor dealt with me. I had about an hours consulatation and he covered everything with me very well. He managed to call up my MRI scans and has requested further investigation into my Pudendal Nerve, which wasn't done initially as it was only the prostate of concern. He understands I am still under the care of a Urologist, but he seemed positive that my pain is being caused by muscular/nerve problems, particularly as 90% of my pain is focused on my left side only. I have pain all around as detailed in my opening post, but the predominant pain area he does think is nerve related. To that end he has recommended a Ganglion IMPAR Block as a diagnostic aid to identify the source of the pain. Hopefully with this and the re-examination of the MRI scan I will start to get somewhere. So now I just await that procedure; and in the future a Cystoscopy, Prostate massage with the Urologist; I'm also going to consider Diflocan the Inflamed kindly mentioned earlier. Stupidly I didn't ask when the Ganglion IMPAR Block procedure will likely to be. But I do feel a bit better that I'm getting this help now after some of the poor treatment I've had in the past.

Tue Apr 10, 2018 10:59 am

prostate454

Joined: Sun May 01, 2016 9:48 amPosts: 643

Re: 2 years and getting desperate

Good luck with the ganglion impar. I noticed some relief from it. Unfortunately it was temporary, but it was relief nonetheless.

Tue Apr 17, 2018 8:12 pm

Lux_d

Joined: Mon Jan 29, 2018 6:42 amPosts: 42

Re: 2 years and getting desperate

So, 3 months of Levaquin and no improvement whatsoever. I'm not surprised really. Next steps:

I have a Uro appt next week and I'm going to ask for Diflucan (anyone know what dosage I should be asking for), Potassium Citrate and a low carb diet. He has said in the past he wants to try a Cystoscopy and prostate massage under general anaesthetic. I want a PCR test from this.

I've also been contacted by the Pain Management clinic. I'm just awaiting confirmation, but I've been given a date of 21 Jun for a ganglion impar block.

So, at least some things to try. Ho hum.

Fri May 18, 2018 4:23 am

tehdude789

Joined: Fri Apr 13, 2018 4:05 pmPosts: 47

Re: 2 years and getting desperate

You need to find a URO that will drain your prostate 3-4 times a week that will resolve some of the symptoms regardless of the antibiotics. The primary method of treatment for prostatitis prior to antibiotics was just prostate massage. Also I wouldn't just start taking antibiotics to hope they work. You need to find a place that will test the prostate fluid and test what antibiotics it sensitive to. If you don't you are going to have a very resistant bacteria living in there thats going to be a pain in the backside to kill in the future.